Question about flare frequency

Everybody is different. I was in a flare years ago and it lasted over a year. I have not had any issues with UC since then. I did have a diverticulosis flare a month ago but it's much better now.

I have had 3 flares, my first in 2013, 2015, and most recently 2018. Before my most recent flare up in 2018 I was having mild symptoms for a year before things went downhill and I went on pred. I think if I was flaring badly ever 6 months I would want to reconsider my meds. As it is, I added Imuran in 2019, things have been pretty stable since then.

I flared for 3 years non stop (with varying severity) until we found the right medication.

My opinion- flaring every 4-5 months suggests you probably don't have a complete remission in between and might need different medication

quincy said...
What mesalamines exactly...?

In the past you mentioned patchy inflammation... what was the response from your doctor?

q

I’m taking 4.8g of Lialda daily. When I asked my GI about the patchiness and the possibility of it being Crohn’s, she said something to the effect of “treatment can cause patchiness” so she doesn’t call it crohn’s. I’m not so sure of that though. When I inquired about the mesalamine enemas she said they wouldn’t do me any good because my rectum is fine 🤔

My last scope (flex sig) was a little over a year ago, if I remember correctly. My GI wants me to have another one done. I’m going to ask her if I can have a colonoscopy instead because I’ve been having off and on bad pains on my right side as well. She’s the first GI I’ve had as an actual doctor as the ones I saw before her just did scopes and that was it.

C_G_K said...

PaperMoon85 said...
When I inquired about the mesalamine enemas she said they wouldn’t do me any good because my rectum is fine 🤔

Is your GI doc an idiot? Sorry but that's just crazy. While it may be true that suppositories stay in the rectum, the enemas can go all the way up to the top of the descending colon.

You know, I’m really starting to wonder 😂

I’m not sure where the inflammation is at right now, but my last scope a little over a year showed active inflammation only at the top of the descending and inactive in the rest of the descending colon, sigmoid, and rectum. My GI only went a little further than the top of the descending colon as it was just a sig and she said it “appeared normal” past the area of visible inflammation. That’s another reason why I’d rather have a full scope than a sig this time.

I’m going to ask her again about the enemas and see if they will help.

I went looking through my patient portal emails and this is what she said regarding the patchy chronic inflammation in my rectum:

“The disease can be patchy because you are already on medication. As such I do not call it Crohn's.”

Still doesn’t make much sense to me and I’d like to get another opinion but it’s slightly complicated/awkward as I work in the same department (some days side-by-side) with my GI doc 😑. I suppose I could casually ask one of the other GI’s in the department though.

quincy said...
I have UC...used oral and rectal meds for 31 years. It has NEVER healed patchy, and Ive never read that it can. UC is pretty much typical in its pattern...think of how a thermometer goes up and down. Chronic patchiness...not UC. Although there is one form that has cecum and rectum involvement with little to no inflammation between. But there would never be patchiness anywhere between...

What medication were you already on?

Do you have a copy of the full pathology biopsies report and the comments by the pathologist?
Did you have a c-scope ever? And when?

q

I had been taking the Lialda when I had my last scope (the flex sig). I did have a colonoscopy in 2017 that showed inflammation in the rectum and sigmoid, however, they only took biopsies of the rectum and TI. Those biopsies showed normal TI and inflammation in the rectum. That office has since closed down.

For my last flex sig, they took biopsies of the top of the descending where the visible inflammation was seen, in the lower descending colon, in the sigmoid, and in the rectum. The top of the descending shower chronic active colitis, the descending showed non-specific chronic inflammation, the sigmoid showed chronic inflammation/inactive colitis, and the rectum showed patchy chronic inflammation with regenerative features.

The pathologist noted: “Distortion of crypt architecture and increased inflammation in the lamina propria. Cryptitis and crypt abscesses noted. No evidence of dysplasia or granulomas. The microscopic features are compatible with IBD. Correlation with clinical and endoscopic findings is recommended.”

i think a full scope is a good plan. sorry you have you have to get a covid test, with any luck you can get the mouth swab one instead of the nasal swab, it is a lot less "uncomfortable."

Normal for us is a sustained remission lasting 2, 3, 5, 8 or more years. If you're flaring twice a year then that's not normal and means you're undertreated. I'd get on some stronger meds, like azathiopurine or remicade and see if you can sustain remission for many years on it.

Regular use of steroids is bad for your body (bone density, increased odds of glaucoma and type ii diabetes). Regular flaring increases the odds of your UC spreading in extent and/or severity.

I don't think there is any known pattern for length of remission. IBD is puzzling to treat due to patients' "heterogeneity of response" to Rx meds. In your case, though, it should help to get a correct diagnosis by having a full scope. The experienced gastroenterologists can even look into terminal ileum to be sure tissue there is healthy. It's important to find out whether you have UC or Crohn's colitis so that you can get on the most appropriate med(s). You might want to raise the question of "patchy" colon inflammation with rectum ok on the HW Crohn's Forum to see if any members there know about that situation & could advise you. / Old Hat